Mum of two Sarah Barker describes discovering that her daughter was disabled as a "very scary and lonely experience". Katie was diagnosed with West's syndrome, a severe form of epilepsy that also means she has learning difficulties, when she was just five months old.
"I wanted to find out more about what was going on and to feel some degree of control," she says.
In Durham, the Making Changes Together initiative, which enables parents to have a say in shaping disability services, has helped her do just that.
Parent input
Parents of disabled children across the county meet at twice-yearly conferences, which are also attended by senior local authority figures. Around 80 parents attended the last conference. Throughout the year smaller groups of up to five parents and five professionals meet face-to-face up to once a month to discuss specific issues from short break provision and information sharing to transport and therapies.
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